Showing posts with label Pain. Show all posts
Showing posts with label Pain. Show all posts

Thursday, June 12, 2014

Days Like This...

When I was first diagnosed with Fibromyalgia I wasn't thrilled with it. It was awesome in some ways to have an answer to what I was suffering, but it was also an answer that the majority of people didn't actually believe in. I wasn't even totally convinced that my doctor totally bought it. It felt kind of like a diagnosis to give someone you were tired of dealing with.

Truth be told sometimes I still feel that way. Sometimes I doubt the validity of my own pain. Maybe I am just a baby. Maybe I am just lazy and fat. Maybe everyone who is my age and size feels the way I feel. I mean I have had 2 back surgeries already, but it is not like I am the only  one who has ever gone through that. In fact I have a friend very close to my age who has also had two surgeries. She doesn't sit around and complain...she has 2 kids and runs marathons for fun! (Yeah she is kind of my hero!). So...maybe I should just shut up.

And then there are days like today.

Days when I wake up thinking it might be a good day. I don't work till 11:30 so I sleep in till 8:30 and lay in bed with the dog till 9. I am sore but think I will be fine once I get moving. I am wrong. I have to use both hands to grip the rail to get down my steps when I take the dog out. When I sit down to watch TV with my cats I cannot handle having them on me. Every time one of them steps on my leg or nudges my arms I literally cry out in pain. Eventually I have to shoo them away. When I get dressed for work I end up in tears. It hurts that much to put on my clothing. I am at work now. I am here until 8pm tonight. The thought of doing anything for that long is daunting. The idea that in 15 minutes I have to go upstairs and sit at the public desk and smile and greet people exhausts me. The reality that I might have to get out of my chair and go help someone petrifies me.

Every part of my body hurts today. I am tired. I am in pain. It is not in my head. It is not laziness. It is not my fault. It is days like this I know I may not be the strongest person around but I do have to fight. Every single day. Days like today I can only ask of my friends....pray for me. Even the strength to do that seems to elude me.

Monday, May 12, 2014

Fibro Day

So every year on Fibromyalgia awareness day I try to write something about the disease or about my experience with the disease in order to raise awareness about it. Today is that day. I am aware, however, that my most consistent readers have been that for awhile and therefore I will endeavor not to repeat myself from  years past. I thought that this year I would try to answer a few FAQs that I get myself from those who know me and care enough to wonder what is going on with me.



1.) What is up with the butterfly in all the pictures?
I gotta be honest - I don't know. It seems to be the mascot of the disease. I didn't know diseases had mascots but...this one does. It is just a symbol I guess but I honestly have never read anything giving a particular reason or origin story for the use of the butterfly.

2.) Are you in pain right now?
The easy answer is yes. But it is not really that simple. There is a level of pain that I have simply grown accustomed to that I basically always have. So if you ask me that at some points I would probably say "no" but what I really mean is that I am not in any EXTRA pain above that which has come to be normal for me. The truth is, at that point there is no pain that is actively keeping me from doing anything or disturbing my life. If I am quiet and focus on my body, however, I can pinpoint several places that hurt. Maybe everyone can do that...I don't think so though because I don't remember it ever being like that when I was younger. So yes, I am always in some amount of pain. So the reality is that even if you think I complain a lot about my pain...I don't. I only complain when that base level moves up to something that I cannot continue to function normally with. The other pain I just live with.

3.) Do the meds help?
YES!!! I am on cymbalta and I cannot over emphasize enough how much better my quality of life is with it. At one point my insurance decided they would no longer cover my prescription and I stopped taking it. I was shocked at the level of pain I went back to almost immediately. I had forgotten how bad it was before I got on these pills. Having said that however, I am NOT better. The pills, for me, help me keep both my physical pain and my emotional ability to deal with that pain, within a functional reality. Without the pills I felt I could not get out of bed. With the pills, it is hard to get out of bed a lot of days, but possible. I know for some patients cymbalta did not work at all, and for others there are other things that have worked better. I am lucky that I have a doctor who found something that works for me, and even more lucky b/c when insurance denied them to me she went to bat for me and wrote them explaining that they were NECESSARY for the control of my disease. They now fill the prescription again.

4.) How does fibromyalgia affect your life?
That answer is easy...work. It makes working so hard. I have a job that I love and am so grateful for. It is not very physically demanding, it is something I like doing, it is in a relatively stress free environment. It is an ideal job. It is so hard for me. It is hard for me to get in 40 hours a week...Every.Single.Week. I am just tired. 8 hours wears me out. When I get home at night I am not able to do anything else. I don't clean (I try to do that on the weekends...promise). I don't socialize. I don't make phone calls. I change clothes, I make the easiest dinner possible (frozen meals are my friend) and I sink into my couch with an icepack. That is pretty much a daily routine for me. I also make sure I am in bed for AT LEAST 8 hours per night no matter what. Most nights I strive for 10 hours.  One of my major symptoms though is that I don't sleep well. Even though I sleep a lot it is not deep sleep so I never wake feeling rested. And the cycle continues.
Also it does make having a social life harder. I have awesome friends who know that often I simply cannot do things I would like to do. They love me anyway. I am very lucky.

So....there are more but this is already long. I know there are many diseases and so many people who suffer from so many things. I do think it is important to know about things like fibromyalgia, though. It is such a silent disease. I don't look sick most of the time. I can have a great day on Monday and then by Tuesday be a wreck, so it is hard to keep up with - even for me! It is a real thing, though, and it is important for the world to know and believe that. For many years it has not been considered with any kind of seriousness and as a result there are people who are told there is nothing really wrong with them when in fact they are in agonizing pain. There are people who lose their jobs because it seems like they are just being lazy, when in fact they are trying as hard as possible. There are relationships lost and so many lives touched by this, as any, disease. So today I am just trying to do my part to make you aware!




Wednesday, January 1, 2014

Day 1: The One Where the Christmas Tree (and Karla) Go Down

So it is New Years Day and I have many plans. I am full of good intentions and lists of things to get done. Today in particular, I decide, the Christmas decorations are coming down. The obvious place to start, my tree. My cats have, over the course of December, totally destroyed my tree. There are only 5 ornaments left on it (which was more than I thought there would be) and all of the branches are bent down instead of up or out.

It started off well enough. I had most of the branches off, my cats were busy jumping in and out of the box I was attempting to put the branches into and having a grand old time. Then it happened. One of the branches got stuck. I was twisting it and turning it, determined to get it out, and then my finger got pinched between the tree and the branch.

I dropped the branch and fell onto the floor in pain. For several minutes I laid on the floor, in tears. It hurt that bad. I spoke to myself out loud. "You are okay" I tried to convince myself, "You have fibromyalgia so it just hurts worse than it should. You are fine." When I finally felt I could I looked at the finger. I saw...nothing. No bruising, no blood, no discoloration or swelling. I simply pinched my finger. I made myself finish the job. The tree came down and into the box. I taped the box up, and then I ran to my room and collapsed into bed.

My finger was still hurting. In fact it was throbbing. My breathing was heavy and I could feel my heart beating too heavy and too fast throughout my body, but most notably in that stupid  pinched tip of my finger. My whole body now hurt. My muscles, especially in my shoulders and neck, were tense and my head was pounding in time to my finger. I remained in bed for almost an hour. Not in that intense of pain the entire time. It slowed down and eventually reached a dull ache that was only in my hand/arm.

During that time, though, my brain kicked in. "How stupid" it taunted me.
"It is only a pinched finger."
"You can't even take a Christmas tree down, how do you think you can take care of this whole house?"
"You are pathetic"
"Stop being ridiculous"
On and on...

This is my disability. I am not confined to a wheelchair. I can see and hear and talk. But...some days I cannot take down a Christmas tree.

I decided this would NOT be the day I give up, though. I am writing this down and my pain is at a level where really only that finger is still hurting. I am going to go and watch some TV while it settles even more, and then I am going to continue taking down Christmas decorations. I might not get much done. I am sure this past hour could have seen more accomplished but...I pinched my finger.

Such is life.

Thursday, May 23, 2013

Fibro...For Me

So I posted some FACTS about Fibromyalgia the other day. People don't get this disease, and it is easy to see why. It is hard to understand. One of the hardest things about having it, to be honest, is the way no one gets it. So I try to explain it without knocking people over the head too hard with it. But today I decided to go with not facts...but personal feelings. How does it effect ME and my life...so here goes.

I read a quote that was about Fibromyalgia that said "Yes I look fine, No I am not." My first reaction was to say "I wish I looked fine...." because it immediately brought to mind my physical appearance. That is not what the quote was about, of course, but it illustrates what is obviously a big thing to me. I look like crap. I have never been a beauty queen. I try not to care to much what other people think of me, and I hate people who judge others by their physical appearance. All of that said, I hate how I look.

I am 50 pounds overweight. Not just over what I would like to be, over what medically speaking I NEED to be. Most of the time I have some kind of rash/sensitivity going on with my face that makes my pale skin look horrible. I often have to wear baggy clothing and no jewelry b/c the tightness of clothes and/or accessories hurts me. These are all things that are directly related to my fibromyalgia. I have friends and family who will quickly comment and tell me I am beautiful, and I am grateful to them. I am so blessed to know that there are people in my life who love me. End of sentence, no matter what I look like. That is an amazing feeling. I wish it were enough, but the truth for me personally is undoubtedly that I have much lower self esteem b/c I do not look the way I want to look. And to a large degree, there is not much I can do about it.

I always want to tell people, I am trying. I diet whenever I have the emotional strength. I love to shop and have cute clothes and jewelry. I just...can only do what I can do. Sometimes I want to tape a sign to my back that says that. It is not that I am lazy. It is not that I don't care...I just can only do what I can do.

The other big issue of Fibromyalgia, for me, goes back to that same quote above as well. What the person actually meant was people cannot look at her and tell that she is sick. That can be really frustrating. Not just for me, but for others in my life. Sometimes I have to cancel on plans that are important or that have been made for a long time. I say I cannot come but I don't seem sick...I look fine, but I am not. It is so hard to make people understand that. Also the pain and symptoms of Fibro come and go. I might be out at a show or bowling or whatever on Monday night, but if you ask me to do the same thing on Tuesday...it is very possible it might be completely impossible for me. To those who saw me out having a good time on Monday that seems like BS...but it isn't. It is just the reality of fibromyalgia. It changes every day. Sometimes hour to hour. I never know when I will feel how. Sometimes I think it is just easier to never make plans, never agree to anything so I never have to cancel or be disappointed. But that gets lonely...which makes the depression worse, which often makes my physical symptoms even more hard to take. It is a cycle...it never really ends.

I guess the last thing I would say though is, I am okay. I am still a person. I still live my life and enjoy the good things that are in it. I still have friends, I still NEED friends, I still like to have a good time. That is maybe the most frustrating thing about this illness is that people either ignore it as if it isn't real, or they treat me like I am an invalid that cannot handle anything. Neither is true. I am just a person. I have things that I struggle with, just like you do. My things may be different, and they may be hard to understand, but they are just...my things. Life goes on. Thank goodness!

Thanks for reading! I have grown a lot since I was diagnosed with Fibromyalgia. The more I know about what is going on with me the more I can deal with it. That is why I want the people in my life to know about it as well, so they can deal with me too!

Wednesday, May 22, 2013

Fibromyalgia Awareness

So May is fibromyalgia awareness month. I have been officially diagnosed with this disease for about 4 years now, and yet I learn new things about it all the time. One thing I know for sure, people do not understand it. They do not understand me and why/when I hurt. It is not an easy thing to wrap your head around, not even if you have no choice like me! Here are some facts from Web MD. Later I will try to write a more personal post about how it effects each and every part of my life daily!


What Is Fibromyalgia Syndrome?
A syndrome is a set of symptoms. When they exist together, they imply the presence of a specific disease or a greater chance of developing the disease. With fibromyalgia syndrome, the following symptoms commonly occur together:

  • anxiety or depression
  • decreased pain threshold or tender points
  • incapacitating fatigue
  • widespread pain
What Are Fibromyalgia Symptoms?

Fibromyalgia causes you to ache all over. You may have symptoms of crippling fatigue -- even on arising. Specific tender points on the body may be painful to touch. You may experience swelling, disturbances in deep-level or restful sleep, and mood disturbances or depression.

Your muscles may feel like they have been overworked or pulled. They'll feel that way even without exercise or another cause. Sometimes, your muscles twitch, burn, or have deep stabbing pain.

Some patients with fibromyalgia have pain and achiness around the joints in the neck, shoulder, back, and hips. This makes it difficult for them to sleep or exercise. Other fibromyalgia symptoms include:

  • abdominal pain
  • anxiety and depression
  • chronic headaches
  • difficulty maintaining sleep or light sleep
  • dryness in mouth, nose, and eyes
  • fatigue upon arising
  • hypersensitivity to cold and/or heat
  • inability to concentrate (called "fibro fog")
  • numbness or tingling in the fingers and feet
  • stiffness
Fibromyalgia can cause signs and feelings similar to osteoarthritis, bursitis, and tendinitis. Some experts include it in this group of arthritis and related disorders. However, while the pain of bursitis or tendinitis is localized to a specific area, pain and stiffness with fibromyalgia are widespread.
What Is the Standard Treatment for Fibromyalgia?There is no fibromyalgia cure. And there is no treatment that will address all of the fibromyalgia symptoms. Instead, a wide array of traditional and alternative treatments has been shown to be effective in treating this difficult syndrome. A treatment program may include a combination of medications, exercises -- both strengthening and aerobic conditioning -- and behavioral techniques.


What Is Fibromyalgia-Related Pain?
Fibromyalgia-related pain is pain that causes you to ache all over. You may have painful "trigger points," places on your body that hurt no matter what medication you take. Your muscles may feel like they have been overworked or pulled even though you haven't exercised. Sometimes, your muscles will twitch. Other times they will burn or ache with deep stabbing pain. Some patients with fibromyalgia have pain and achiness around the joints in their neck, shoulders, back, and hips. This kind of pain makes it difficult to sleep or exercise.

There are roughly 20 different kinds of nerve endings in your skin that tell you if something is hot, cold, or painful. These nerve endings convert mechanical, thermal, or chemical energy into electrical signals that convey information to the brain and spinal cord -- also known as the central nervous system or CNS. These signals travel to areas of your CNS where you perceive the stimuli as the painful sensations you actually feel -- sensations such as searing, burning, pounding, or throbbing.

Research suggests that the pain associated with fibromyalgia is caused by a "glitch" in the way the body processes pain. This glitch results in a hypersensitivity to stimuli that normally are not painful. According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), research has shown that people with fibromyalgia have reduced blood flow to parts of the brain that normally help the body deal with pain.

How Does the Chronic Pain of Fibromyalgia Impact Lives?
Fibromyalgia's chronic pain seems unending. The ongoing headaches, neck pain, aching joints, and painful tender points prevent sleep, causing you to awaken frequently at night. The chronic sleep disorder of fibromyalgia results in increased achiness, morning stiffness, and daytime fatigue. While you want to exercise and be active, you may suffer with foot pain, hip pain, knee pain, or other painful joints. All of these make it next to impossible to exercise with friends or to play with your kids or grandkids.

The constant pain causes more irritation and difficulty dealing with others, including family members, friends, and people at work. For women with fibromyalgia who must take care of family members and work full-time, coping with pain is a challenge. If there is undiagnosed pain and no effective treatment or medication for the fibromyalgia, the overwhelming feelings can lead to irritability, exhaustion, anxiety, social isolation, and depression.